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From the Bonham Journal, Wednesday September 20th, 2006 for Craniofacial Acceptance Month

“God chose us as parents for a reason,” noted Don Dougan.

As Brisa sits in her highchair munching her favorite food, cheese, her smiles are contagious. She begins to laugh and giggle along with a little showing off of course. After two slices of cheese, Brisa is still hungry. A quick reach for the box of cookies in her mother’s hand is an obvious answer of yes or no. She picks up each cookie as if to inspect it as children do. The particular cookie is not quite right for eating just now, Brisa sets the cookie down and begins her grins and giggles.

Brisa is bound to be life of the party. Her spirit at such a young age is more than contagious. However the past year was not so certain for the Dougan family.

Brisa was born April 25, 2005. Melissa had tried for months to get pregnant. The dream had finally come true and both Melissa and her husband Don couldn’t wait for their arrival. The delivery would be Melissa’s first and Don’s second.

Melissa was admitted nine months later on a Monday to induce labor. After more than a few hours of excitement and pain, Brisa had entered the world. Moments later Melissa felt relieved but Don noticed that Brisa’s fingers and toes were webbed together. ‘Her feet are webbed together,” commented Don as Melissa lay unable to see for herself.

A doctor of 20 years noticed Brisa’s webbed feet and fingers and declared it was the first time he had ever seen anything like it.

Alarming is find out after nine months of a normal pregnancy that something is wrong with the child. More alarming is to hear a doctor of 20 years explain how he had never seen such a thing.
So the journey begins. As Brisa is whisked away, Melissa is more than concerned with her child’s health and also attempting to recover from an unscheduled c-section. Don is notifying family members anxiously awaiting good news of some kind of problem. As Don finally gets Melissa to sleep after assurance of their daughter’s well being, he steps into the hallway and is grabbed by a nurse.

“We found it in ‘the book’”.

Don is taken to an opened book from possibly 1970 which include pictures of children severely affected with Apert Syndrome and words that include possible death. The book explains that Apert is a congenital condition that falls under a broad classification of craniofacial/limb anomalies. The syndrome causes the abnormal growth of several bones in the body.

After letting the information sink in and somewhat understand what the condition is, Don approaches his mother and daughter to attempt to explain with copies of the book in hand.

After an emotional frenzy, Melissa wakens; Don sits waiting with millions of thoughts running across his mind. As he stutters thoughts and words, Melissa thinks the worst. Don is finally able to explain the syndrome which gives Melissa a short sigh of relief. The possibility of death has safely exited her mind. Her bold, optimistic personality is shining through.

As the parents talked with social workers, Don remembers the one word that she stressed to the two of them. Honesty. “I didn’t understand what she meant until now,” said Don. It’s about being honest with yourself and understanding that some days are going to be better than others. It’s releasing the thoughts of death and the hardships of growing up with the condition. When the stares are sometimes hard to take and the whispers are no longer whispers, dealing with the carelessness of others and accepting the laughs and stares.
Immediately follow the days of hospital food and uncomfortable bedding, Don began research on the condition. The methods of research have become part of Don’s life.

Within hours of maneuvering the mouse on his computer, Don found Teeter’s Page which is a family support network for people with Apert and other craniofacial disorders. The page offers information and support for families living with the condition. For the Dougan family it was only a week after Brisa’s birth that they had scheduled to meet two other families with children diagnosed with Apert Syndrome. As the dinner came to an end, Melissa loaded Brisa in her car seat and was unable to contain her emotions.

The cause of Apert Syndrome is still an unknown issue according to Dr. Jeffrey Fearon, M.D., director of The Craniofacial Center in Dallas.

Brisa will have a total of three surgeries done this year. The first was to help separate her fingers and toes which will be followed with another surgery next month. The second surgery was a cranial vault. Brisa will have about five years of non surgery before performing more. Following her surgery in October, Brisa will have her arms and legs in casts for three weeks to help healing of her new fingers and toes which will be cut apart. Luckily for Brisa her fingers already have the appropriate bones.

Melissa explains that the hardest event over the past year was releasing Brisa to go into surgery. As the room is filled with hugs and kisses, the thoughts of what could happen begin to spiral as soon as she leaves the arms of those who love her so much.

With the family support of the Dougan’s who recently moved to Bonham from Midlothian, Brisa’s future is more than shining.

September has been declared Craniofacial Acceptance Month. The most recent data shows that in 1 in 65,000 births, a child is born with Apert Syndrome.

 

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